Approaches for helping children and adolescents with cystic fibrosis to take part in decisions about their healthcare


Review question

We reviewed the evidence on ways to help children and adolescents with cystic fibrosis to take part in decisions about their healthcare.

Background

Cystic fibrosis is a genetic condition mainly affecting the lungs and digestive system. In the lungs there is a build-up of sticky mucus making infection more likely and damaging the airways. Sticky secretions from the pancreas block the flow of digestive juices into the gut, so that food is not digested or absorbed properly.

Improvements in treatments mean that people with cystic fibrosis are living longer and long-term management issues have become more relevant. In childhood there is a high burden of complicated treatments which then continues throughout life. Young people with cystic fibrosis need to be included in decisions about their healthcare, so that they can develop skills to manage their condition and assume responsibility for long-term care. In shared decision-making, a child or adolescent is actively included in healthcare decisions that affect them. We know from research with children that they want to be involved in healthcare decisions at a level of their choosing with the support of their parents and healthcare provider. We wanted to find out if there were any good techniques for encouraging children and young people with cystic fibrosis to take part in decisions about their healthcare and to identify any adverse effects.

This review was funded by a Cochrane Fellowship awarded to the main author.

Search date

The evidence is current to: 19 March 2019.

Study characteristics

We planned to include studies where the people taking part would be put into groups at random. We wanted to compare approaches to shared decision-making for children and adolescents with cystic fibrosis aged between four and 18 years. Examples of these would be providing information, checking the young person understood and was prepared to participate in decision-making about their healthcare, the use of decision-aids and training or educational programs. We planned to include approaches aimed at children and adolescents, at parents or at healthcare professionals (or any combination of these) where the focus was to promote shared decision-making for children and adolescents with cystic fibrosis.

Key results

We did not find any studies that were eligible to include in the review. We think future research should aim to test models of shared decision-making for young people with cystic fibrosis, which could be developed from existing models for adults; and also work out which methods young people prefer. It is also important to train health professionals in using shared decision-making and make sure that training is consistent across all countries.

Authors' conclusions: 

We were unable to identify RCTs with evidence which would support healthcare policy-making and practice related to implementation of shared decision-making for children and adolescents (aged between four and 18 years) with CF). We hope that having identified this gap in research, awareness will increase amongst researchers of the need to design high-quality shared decision-making interventions for young people with CF, perhaps adapted from existing models for adults, and to test these interventions and children's preferences in RCTs. It is also important to target health professionals with evidence-based education programmes on shared decision-making and a need for international consensus on addressing the variability in education programmes.

Read the full abstract...
Background: 

Shared decision-making is important in child and adolescent healthcare because there is growing international recognition of children and young people's rights to be included in decisions that affect them. In order for young people to participate effectively in shared decision-making they need to develop the skills of engagement with healthcare professionals and confidence in interacting with them. They also need to learn how to manage their condition and treatments on their own when they move into adulthood. Children and young people who participate in shared decision-making in healthcare are likely to be more informed, feel more prepared, and experience less anxiety about the unknown. Significant improvements in cystic fibrosis (CF) survival over recent decades, due to improved therapies and better management of care, means that young people with CF are routinely transitioning to adult healthcare where increasing emphasis on self-management brings greater complexity in decision-making. We need to know what interventions are effective in promoting shared decision-making for young people with CF.

Objectives: 

To assess the effectiveness of interventions that promote participation in shared decision-making for children and adolescents (aged between four and 18 years) with CF.

Search strategy: 

We searched the Cochrane Cystic Fibrosis and Genetic Disorders Group's Cystic Fibrosis Trials Register, compiled from electronic database searches and handsearches of journals and conference abstract books. We also searched the reference lists of articles and reviews addressing shared decision-making.

Date of most recent search: 12 March 2019.

We searched PubMed, CINAHL (EBSCO), Embase (Elsevier), PsycINFO (EBSCO), WHO ICTRP, ASSIA (ProQuest), ERIC (ProQuest), ProQuest Dissertations and Theses, and ClinicalTrials.gov. We contacted study authors with published relevant research in shared decision-making for adults to ask if they were aware of any published or ongoing studies on the promotion of the intervention for children or adolescents (or both) with CF.

Date of most recent search: 19 March 2019.

Selection criteria: 

We planned to include randomised controlled trials (RCTs) (but not cross-over RCTs) of interventions promoting shared decision-making for children and adolescents with CF aged between four and 18 years, such as information provision, booklets, two-way interaction, checking understanding (by the participant), preparation to participate in a healthcare decision, decision-aids, and training interventions or educational programs. We planned to include interventions aimed at children or adolescents (or both), parents or healthcare professionals or any combination of these groups provided that the focus was aimed at promoting shared decision-making for children and adolescents with CF.

Data collection and analysis: 

Two authors independently reviewed papers identified in the searches.

Main results: 

No eligible RCTs were identified for inclusion in this systematic review.

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